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ash128083

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  1. Hi all! I was wondering how many of you have chosen to be on daily suppressive therapy, which medication and dose you are on and how it is working for you. I’ve had the virus (genitally) for about 10 years and was on acyclovir 400mg 2x a day for 8 that all of a sudden stopped working so my doctor switched me to valacyclovir 1g daily two months ago. So far these two months I have not had an outbreak (this past year was hell for me, 1-2 outbreaks a month for a year while on the other medication) thank God and I’m hoping they continue to work. Does anyone feel like one medication works better than the other? Has anyone’s outbreaks gotten worse over the years as opposed to better? Has the nature of your outbreaks changed over the years (I used to get a typical sore someone on my labia but now the outbreaks occur in the form of what feels like a yeast infection inside of me with a lot of pain, swelling, itching and irritation). I also take 2,000mg of Lysine, a probiotic and various vitamins, exercise daily and eat pretty healthy. For those in a relationship where the other person is or was hsv negative, how long were you together before they contracted the virus, or have you still not passed it?
  2. @@gorgeoustechie ugh we have been together for 8 years, married almost 2 and have had 2 children together (i also have a daughter from a previous relationship). Things weren't typical for us when we got together, we just kind of happened even though we weren’t supposed to, there was a lot of trauma early on and difficulties and we never discussed our sexual pasts, there were many times I wanted to tell him and couldn’t get it out, I just didn’t know what to say and got deeper into this “secret”. I never had symptoms or outbreaks and have been on antivirals for years and we use condoms very frequently so it wasn’t like I physically had to hide anything up until now. My therapist and I are working on a plan to tell him because I don’t know where or how to do it. It’s terrible but it is going to be done.
  3. I’ve been reading up on monolaurian and am just concered about something called the jarisch herxheimer effect. Not sure how common that is. I also was told red marine algae helps. What exactly does a neuropath do?
  4. I have been on antivirals for suppression for 8 years. My doctor just switched me from acyclovir 400mg 2x a day to valacyclovir 1g once a day because it seemed like acyclovir wasn’t working like it used to. Does anyone have any insight on if long term use of the antivirals actual make the virus stronger? My doctor said antiviral resistance isn’t common in healthy patients but I’m just not so sure. This past year has been HELL for me with hsv (genitally not sure if its type 1 or 2 and my doctor said testing to see for which type doesnt matter because they present themself in the same way) and I’ve had it for 10 years. I thought over time your body naturally suppresses it better. I’ve heard from a few people monolaurian and red marine algae help but I’m not sure...
  5. Hi! I’ve had HSV for about 10years. When first diagnosed I would get typical outbreaks, a small cluster of blisters that would turn into a sore, every few months, and decided after a few years to go on suppressive therapy. For the first 7 years I had zero outbreaks and zero symptoms. About a year and a half ago, however, I was getting what felt like prodrome symptoms and it was happening constantly. I would feel irritation around my clitoris and inner labia. Sometimes it would look red but it would go away and never turned into an outbreak. I started using condoms with my husband because he is negative and I wanted to keep him safe. Fast forward to 11 months ago I started getting what I thought was yeast infections every month the week I ovulate. I wasn’t getting any typical sores just becoming red and inflamed and extremely uncomfortable. I started to think that the virus somehow changed the way it presented itself in my boday and would increase my dose during these times in addition to using over the counter monistat. Is resistance to antivirals common in people with normal immune function? I went to my doctor on Wednesday and they changed my medication to valacyclovir 1g daily and said this should help. So far I still feel like a “zing” down there on and off but no sign of anything. Hoping this medication starts working like it’s supposed to.
  6. @Grace78 @Faith8 @beBravebeBOLD Well I FINALLY told both my therapist and PCP about my HSV and it felt like such a weight being lifted off my shoulders. My therapist even told me that not only has she oral herpes outbreaks but she’s also had a vaginal herpes outbreak about 20 years ago and hasn’t had one since. It made me feel a lot better but thought to myself “well you’re lucky.” The more I think about it the more I believe that a lot more people have the virus than what all the websites state. Of course it feels like less of a big deal when you’re symptom free. My PCP said that in my case she thinks the prednisone use wekeaned my immune system and where I get sick a lot I need a higher dose of the valacyclovir to get it under control. She doesn’t think I have any underlying issues or resistance at this point and said to give it several months on the 1 gram dose and see if theres a difference. She also took a culture to rule out a yeast infection. Where I just finished the Monistat 7 she said it didn’t look like one but that could’ve cleared it up. She didn’t say that it looked like I was having an outbreak either, so I’m not sure what it was. I started my first dose of the 1g valacyclovir today so I’ll see how it goes. I feel an occasional itch or prickle feeling on and off today and I can’t stop thinking about it. It goes away but I dwell on it andI swear it makes it worse. Maybe us tormenting ourselves over this is making the symptoms worse, but its so hard not to. I ended up cancelling my appointment with my OBGYN. I figured I’d wait and see if the new dose helps. Fingers crossed. I haven’t had sex with my husband in almost 3 weeks and I’m so scared to. He still doesn’t know I have this! I’m so scared and ashamed that I have let this go for so long. It’s eating me alive. I see my therapist again next week to help me come up with a plan for telling him. I’m so lost. How did you all disclose to your partner?
  7. Grace78 I am so sorry to hear about your loss. When I was pregnant with my 1st boy we found out he had a congenital defect and would most likely not survive. I was on acyclovir at the time and thought that contributed to the defect. My doctor reassured me that tha antiviral is very safe to take during pregnancy but I know what you mean. I still think about it. I went on to have a healthy baby boy a year later (still taking antivirals during that pregnancy as well). My husband and I are currently looking to buy a house and want to have another child but I feel like that’s never going to happen because I won’t sleep with him without using a condom and I always make excuses. I have also become the “blow job queen”. I feel super guilty about not wanting to have sex with him and try to do than stand to at least keep them satisfied but it hurts me so much that I can’t love my husband, and be intimate with him because of this. The only thing I can think of that has caused my virus to spiral out of control is from being on prednisone so much in the past year for my asthma. I found a post on here from a man who is experiencing the same thing from being on the steroid. I had no idea that I could awake in the virus, but one would think after coming off the medication and starting to build up your immune system again the antivirals would help suppress this thing. I can’t imagine being an elderly woman and suffering from this like I am now. My primary care doctor doesn’t even know that I have this my gynecologist is in a separate medical facility and I was always so embarrassed to tell her. I always feel like I’m being judged. I wish more people would communicate about this disease and talk about it, because I feel like so many more people have it than what the statistics say. They won’t even test you for this and less you specifically asked not to mention people who don’t have symptoms and have the virus or who are too scared to get tested. I don’t know why there’s such a stigma. I wish we could all be like oh I have herpes, so do I ::high fives:: so at least we wouldn’t be made to feel so awful. I’ve been on anxiety medication on and off since the death of my son and up until recently I have had to take the anxiety medication almost daily because of what this virus does to me mentally.
  8. I don’t know why doctors aren’t researching this more and listening to their patients and trying to come up with betyer medicine/vaccine...anything. I feel like it’s not a priority because this virus won’t physically kill you, but mentally it really takes a toll. I feel like I am more infectious than ever because of the constant symptoms. I never want to be intimate with my husband, even without symptoms, even using a condom because I am in such fear of passing this on to him. I can’t enjoy sex anymore because I’m so paranoid. Hopefully my doctors give me some answers this week and I can share them with you.
  9. I feel your pain. I have had GHSV (not sure if its type 1 or 2) for about 10 years. The past 8 I have been on acyclovir that worked wonders and never had any symptoms or outbreaks until last March. Since then I have had constant prodome symptoms that don’t seem to go away, itching, irritation, discomfort, redness etc.,. I’ve also started having what I thought to be yeast infections at least once a month because I’m not getting typical sores but now I think they are outbreaks. This past one happened 2 weeks apart. I’ve upped my acyclovir to try and get this under control but it has been completely debilitating. My doctor did prescribe me valacyclovir 500 mg once a day and the only month I was free from anything was in October when I took 1g a day which is the correct dose to be on from what I’ve read. I have an appointment with my PCP and Gyno this week because I don’t know if there’s an underlying issue or what to do anymore. It really takes a toll on you mentally and physically. Hang in there! What dose of valacyclovir are you on? I definitely want to stay on that just to try and help with the transmission (my husband is negative). I also take a bunch of supplements and vitamins but nothing seems to be helping.
  10. I’m a woman but have been experiencing the same thing. I’ve had HSV2 for almost 10 years and have been on antivirals for 8. I also have asthma so I am very familiar with prednisone and am usually on that at least once a year. In the past 8 years I hav had zero outbreaks even while on prednisone up until this past year which has been pure hell. I have had to use prednisone maybe 3 times in a year for my asthma and have been having horrible outbreaks at least every month. The daily antivirals do not seem to be working eventboughI increase them during my outbreaks. I take 2,000mgof lysine a day, vitamin c, ehinacea, zinc, b complex, and olive leaf extract, I eat well and exercise 5x a week, no added stress besides these chronic outbreaks which seem to be getting worse and worse. I’ve finally made an appointment to discuss with my doctor what to do and to get tested for other diseases/hormone problems etc because it has been completely debilitating.
  11. @Sadpanda @Grace78 @beBravebeBOLD This is the first time I have joined a forum and talked to others with the same condition. I have felt so alone for so long. I am trying my best to get the support I need. I don’t want this disease to control my life. I just confided in my best friend of 28 years about this (she gets real bad cold sores so I felt like she could somewhat understand). I was in such fear of how she would react and she thinks that it’s not a big deal, it’s not deadly, and to go to whatever doctor I need to to try and get these symptoms under control so I don’t have to suffer constantly. She thinks my husband and I can work this all out but I’m so scared he’s going to leave me and I don’t know how to tell him. I have been in such horrible pain and discomfort, itching both internally and externally, not to mention I have my period and wearing a pad I think has made this all worse. I’ve increases my acyclovir to 4-5 a day in addition to using monistat and usual vitamins and supplements idk what is working and what’s don't. I can barely walk or do anything with my children. It’s been extremely debilitating. Why would this virus all of a sudden go haywire? Do your doctors have ANY answers? I see my therapist, PC and OBGYN next week and I’m so stressed over it. If they can’t help me I’m going to get a referral to an infectious disease specialist. Something HAS to help. I’ve also noticed with all of these symptoms I’ve had a problem with vaginal dryness. I wish someone could find a vaccine. I don’t think these doctoes understand just how physically and mentally disabling this virus is. I hope once has past I can get back on the 1mg of valacyclovir. The one month I did that out of the past 12 I was symptom free. 1 month out of 12! No one shouls have to live like that. Are any of you in relationships? I’m having a real hard time disclosing to my husband (horrible I know, we’ve been together for 8 years and have 2 kids, I never had symptoms or outbreaks being on the meds and never said anything because I didn’t know how, we were never supposed to be in a relationship and ended up getting pregnant very early and our son passed away shortly after birth, so I never knew when or how would be the right time. When these symptoms startes coming back a year ago I started making him use condoms while continuing my meds and I completely abstain when I start feeling off. He knows something is going but doesn’t know what and I have no idea how to do this now. I’m petrified this will tear my family apart and it’s my fault. I hope mu therapist next week can help me. I’m definitely getting the red marine algae to try and I also read that lauricidian (monolaurian) or something like that is supposed to help. Both are pricey but at this point I’m desperate. Thank you all for commenting. It’s comforting to know I’m not alone.
  12. I have appointments with my therapist, OBGYN and Primary Care next week (super stressful week). Hopefully they can help or refer me to a specialist because I can’t go on like this.
  13. I was diagnosed with GHSV about 10 years ago. I’m not sure if is GHSV 1 or GHSV 2. For the past almost 8 years I have been on daily suppression of acyclovir 400mg 2x a day (I initially started with 200mg 2x a day and even the low dose worked. For about a year now I have been getting chronic outbreaks. They even seem to be worse now then when I was first diagnosed. In the beginning I would get one typical blister that would come out and eventually heal over. While on antivirals it pretty much eliminated my outbreaks (except when I was on birth control pills, then I would get what I thought was an outbreak but felt more like a yeast infection about every 4-5 months. I’ve been off birth control for about 4 years now.) Last year I started to get occasional sharp pain or irritation in my vagina. I figured it was prodome symptoms and increased my acyclovir to 3 pills a day for a week. After a few months of this happening I had what I thought was a very bad yeast infection. I got over the counter medication and increased my antivirals just in case it was an outbreak. I didn’t have any visible sores just a lot of irritations, discomfort and redness. I couldn’t walk at times because it was so uncomfortable. This has been happening about every month now for a year, sometimes twice a month and almost always during ovulation. Last year I was on prednisone for my asthma a few times (and have been in the past without any herpes flare ups) and wasn’t sure if this somehow reactivated the virus. I went to my doctor in August and he thought where I wasn’t having typical sores perhaps I keep getting yeast infections for some reason. He changed my antivrial to valacyclovir 500mg 1x a day (which after doing some research and taking it for a month I know that the effective dose for a healthy person with more than 9 outbreaks a year is 1mg 1x a day. In the month of October I tried take 1g a day and that month I had nothing occur down below, which makes me think these yeast infections could be outbreaks even though I get no sores and almost always the pain, reddness, discomfort and irritation is inside my vagina (sorry if thats tmi). Two weeks ago while ovulation I had an “infection”, I’m 4 days late for my period (not pregnant), have been on antibiotics for 5 days and woke up this morning with extrmeme discomfort, redness and irritation out of no where. I’ve stopped the antibiotics, started probiotocs, increased my acyclovir and lysine intake (I usually take 2-3g daily). I made an appt with my primary care on Wednesday and have an appt with my GYNO on the 10th. I’m not sure which doctor I should even see at this point (my GYNO) prescribes me the antivirals). I’m going to ask to be put on 1g daily valacyclovir and see if that makes a difference. I’m debating on having other tests done to rule out immune disorders etc. Does anyone have this problem? I thought the virus becomes naturally more suppressed over time the longer you have it? Does anyone see an infectious disease doctor for their HSV? I’m a 33yr old otherwise healthy female. I exercise 5x a week and eat well. Sleep could be better but I have two children. This is really taking a toll psychologically on myself and my marriage. Any advice would be great.
  14. I was diagnosed with GHSV about 10 years ago. I’m not sure if is GHSV 1 or GHSV 2. For the past almost 8 years I have been on daily suppression of acyclovir 400mg 2x a day (I initially started with 200mg 2x a day and even the low dose worked. For about a year now I have been getting chronic outbreaks. They even seem to be worse now then when I was first diagnosed. In the beginning I would get one typical blister that would come out and eventually heal over. While on antivirals it pretty much eliminated my outbreaks (except when I was on birth control pills, then I would get what I thought was an outbreak but felt more like a yeast infection about every 4-5 months. I’ve been off birth control for about 4 years now.) Last year I started to get occasional sharp pain or irritation in my vagina. I figured it was prodome symptoms and increased my acyclovir to 3 pills a day for a week. After a few months of this happening I had what I thought was a very bad yeast infection. I got over the counter medication and increased my antivirals just in case it was an outbreak. I didn’t have any visible sores just a lot of irritations, discomfort and redness. I couldn’t walk at times because it was so uncomfortable. This has been happening about every month now for a year, sometimes twice a month and almost always during ovulation. Last year I was on prednisone for my asthma a few times (and have been in the past without any herpes flare ups) and wasn’t sure if this somehow reactivated the virus. I went to my doctor in August and he thought where I wasn’t having typical sores perhaps I keep getting yeast infections for some reason. He changed my antivrial to valacyclovir 500mg 1x a day (which after doing some research and taking it for a month I know that the effective dose for a healthy person with more than 9 outbreaks a year is 1mg 1x a day. In the month of October I tried take 1g a day and that month I had nothing occur down below, which makes me think these yeast infections could be outbreaks even though I get no sores and almost always the pain, reddness, discomfort and irritation is inside my vagina (sorry if thats tmi). Two weeks ago while ovulation I had an “infection”, I’m 4 days late for my period (not pregnant), have been on antibiotics for 5 days and woke up this morning with extrmeme discomfort, redness and irritation out of no where. I’ve stopped the antibiotics, started probiotocs, increased my acyclovir and lysine intake (I usually take 2-3g daily). I made an appt with my primary care on Wednesday and have an appt with my GYNO on the 10th. I’m not sure which doctor I should even see at this point (my GYNO) prescribes me the antivirals). I’m going to ask to be put on 1g daily valacyclovir and see if that makes a difference. I’m debating on having other tests done to rule out immune disorders etc. Does anyone have this problem? I thought the virus becomes naturally more suppressed over time the longer you have it? Does anyone see an infectious disease doctor for their HSV? I’m a 33yr old otherwise healthy female. I exercise 5x a week and eat well. Sleep could be better but I have two children. This is really taking a toll psychologically on myself and ny marriage. Any advice would be great.
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